Fox 5 Morning News and… me?!

I got a call this morning from Fox 5 Las Vegas.   They want me to come in tomorrow morning for an in-studio interview! Of course, I was half-awake when she was giving me the information, but all I know is that we have to be there at 7 am for an 8:45 am taping. […]

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CBS local mention!

Students at John C. Vanderburg Elementary Support World Rare Disease Day! This Friday, the student body at John C. Vanderburg Elementary School will be doing their part to raise awareness on World Rare Disease Day. The students will be making bracelets in support of the sister of two students at the school, who suffers from […]

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Stomach virus?

Midnight on the dot. I have spent the last 20 minutes or so cleaning smelly diarrhea off Hannah and after that, my mattress.  It was time to change the sheets on our bed anyway, and I wasn’t a huge fan of the pajamas she was wearing.    This is the second time in the past […]

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Vomiting while asleep!?!

Hannah threw up today.  It has been quite a few weeks since she has actually vomited, which has been wonderful.  But was is really disturbing to me is that she did it while she was asleep during her nap.   She didn’t even wake up when she did it!  Her nurse was sitting right next […]

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School event coming up!

We are just four days away from Ethan and Abigail’s school campaign in recognition of World Rare Disease Day! The principal has gone above and beyond anything I could have ever hoped for with this campaign.   Not only are the entire staff and student body encouraged to wear denim jeans that day (for Jeans […]

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Undercover Boss and MPS (Sanfilippo Syndrome)

Did you catch Undercover Boss last night?  The one with the CEO of Mack Trucks? We were watching it last night with the kids, and when it showed that little snippit preview of the grandfather talking about a disease where his kids are “missing an enzyme,” Daddy and I just stopped in our tracks.   […]

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